When do you want your shock?

How do you cope when you are told your unborn baby has a serious heart defect? One woman tells her story, writes SHEILA WAYMAN

KAREN DENNING is not sure to this day whether it is better to know before or after birth that your baby has a serious heart defect.

“When do you want your shock?” she asks rhetorically. For her and her husband, Niall Bodie, the devastating news came at the 20-week scan of her first pregnancy.

It showed the baby she was carrying had a hypoplastic heart defect – only three of the four chambers in the heart had developed; he was missing a left ventricle.

It is an anxious enough time when you are pregnant in normal circumstances. “But to carry this fear as well is indescribable,” she says. “There were nights I cried myself to sleep.

“I cried the morning I went into labour with the fear of what was ahead of us. It is a very lonely, unknown road you go down.”

Nearly one in 100 babies is born with congenital heart disease, ranging from simple cases with no symptoms to complex, life-threatening conditions. About half will require surgery and life-long follow-up.

Towards the end of her pregnancy, Denning was at Our Lady’s Children’s Hospital Crumlin to see the cardiologist already assigned to her unborn son, when an array of photographs of children after heart surgery caught her eye.

“I remember looking at the photos and thinking, someday his picture will be there; we will be leaving here.”

On the way home, she and her husband stopped at Dunnes Stores. “They had children’s little rugby jerseys and I bought a six-nine months one. I was determined that he would live to put that on. That is the kind of hope you have to have.”

Her hope was vindicated. As we speak, four-year-old Christian is in and out of the large, light-filled kitchen at their home in Dunboyne, Co Meath, keen to sit at the table with us. The green Ireland rugby jersey he wears today is many sizes bigger than that first one his mother bought for him.

Later, when Christian wanders in stripped to the waist after some exuberant bed-jumping upstairs with his little brother, a vertical scar down his chest is the only physical indication that his early childhood has been different from that of his peers. He has twice undergone major open-heart surgery and now faces a minor follow-up operation in Crumlin later this month.

Christian was well at birth in Mount Carmel Hospital, so the first surgery, which is normally done within a matter of weeks, was not carried out until he was four months old. As a first-time mother, Denning did not only have to learn about nappies and feeds, but also understand complex medical issues.

She found meeting other parents of children with heart conditions through the support group, Heart Children Ireland, hugely beneficial. By exchanging information and experiences, parents help each other through the day-to-day fundamentals of what is different for their children.

A glimpse at the discussion forums on heartchildren.ie brings you into a world where the description of the poster’s children at the end of each message is not confined to gender and age but a string of acronyms denoting heart conditions and medical procedures that make perfect sense to this particular online community.

“You are trying to come to grips with all this stuff and then you have to take on the [health] system and you do,” says Denning, a barrister. “That is the hardest battle of all. The actual dealing with your child with a heart condition you learn to cope with, but the system is what wears you down.”

She has been frustrated at the apparent lack of communication between the various organisations “in the so-called system, there is no system”. Once your child is out of hospital, you are very much on your own, she says.

Christian spent more than six weeks in Crumlin hospital after his first operation, due to various complications. When they got him home, his feet were pink for the first time – changed from the purple hue up to then.

His physical recovery from surgery was speedy enough, she says, “in as far as his chest had been cut open and his ribcage broken. Both in Christian and in us, the mental recovery was the hardest part.”

Each was dealing with post-traumatic stress.

“Handing your child over to an anaesthetist for open-heart surgery – or any surgery for that matter – has to be the most traumatic thing a parent ever has to do,” says Denning, who chose to carry Christian down to surgery herself both times.

“You are entrusting your child’s life to these professionals and hoping that they can do the very best they can and that they can cope with any possible scenario that will arise during that surgery.”

The stress of the situation was not helped by Christian having his surgery cancelled the first time just 25 minutes before it was due, because there was no bed available in the intensive care unit (ICU).

“Words cannot explain how upsetting that is; you have yourself mentally prepared. I understand that there is no bed in ICU because some child is so sick, but that does not deal with your anger and upset.”

Long waiting lists and surgeries being cancelled at Crumlin hospital, which is the national centre for children with congenital heart disease, are a “huge issue” for Heart Children Ireland.

“It is something we are constantly meeting the hospital about,” says its chief executive officer, Margaret Rogers. There were 110 children on the cardiac surgical waiting list at the end of last week, according to the hospital, which she describes as unacceptable.

All cardiac patients are prioritised on the basis of clinical need and no distinction is made between public and private patients, says a hospital spokeswoman. Some children on the waiting list may not be clinically ready for surgery due to underlying issues.

The HSE is committed to increasing the number of ICU beds in the hospital from 21 to 25 by the end of this spring; in the meantime, two additional transitional care unit beds were opened. An initiative to provide additional cardiac surgery in 2010 has been extended for a further 10 months from February this year.

This initiative is for “out of window” patients – those waiting for procedures beyond the time determined by the hospital’s multidisciplinary cardiac team. Theatre activity increased by 12 per cent, with 55 additional operations performed, bringing the total number of cardiac thoracic operations carried out in 2010 to 558.

After Christian’s initial operation to “reorganise the plumbing of his heart”, he was back in at age three for a second major operation to work on the blood flow to his lower body. As a result, says Denning, night-time continues to be very difficult for Christian and his parents.

“If I was Christian, I would be afraid to close my eyes at night too, given what he has been through. There is a dependency on one of us, mainly his dad, to go into him and stay with him. He is very traumatised and that is perfectly understandable.”

She is determined that he leads as normal a life as possible: he goes to playschool, he cycles, rides ponies, does drama but is not big into football.

“I decided when I was pregnant with Christian that if we got to a certain age and he did not make it for whatever reason, I would rather be sitting thinking back over all the wonderful things he did in life, than sitting saying, ‘I wish I had let him climb the slide . . . I wish I had let him ride a bike’.”

However, although he is fairly robust, they don’t take unnecessary risks.

“If he has a bad cold or chest condition, you would tend to take him to the doctor quicker than you would another child – that is partly to do with the warfarin, which is a very volatile drug.” Whether or not Christian remains on the anti-clotting drug for the rest of his life depends on how he progresses.

The monitoring of blood levels that is required when a child is on warfarin means weekly visits to Crumlin hospital – and all the trauma, travel and disruption to school that may involve. Denning says they took control of the situation by buying a coagulation-testing machine so they can check Christian’s blood levels at home.

The hospital has since asked Heart Children to provide machines for every child on warfarin who is suited to home-testing because it does not have the funds to buy them.

Denning questions why these children have to depend on charity fundraising for a basic piece of equipment that costs about €600 plus VAT to buy privately but which the State could buy in bulk at a fraction of that and would be cost-effective for all concerned.

“They are such an essential part of the older child’s life – it removes the travelling to Crumlin and allows them to take control of their own blood testing and their own healthcare.”

With the cause of Christian’s heart defect unknown, Denning was “terrified” when she was pregnant again. At the 20-week scan, “when she turned around and said ‘I can see four perfect chambers in this heart’, I cried with joy.”

Their second son, Stefan, has been the making of Christian, she says, and the two boys are clearly very close. But she is also conscious that Christian’s heart condition could have a knock-on effect on Stefan’s childhood.

“I don’t want Stefan growing up thinking that it has always been about Christian. As a parent it is hard to balance your children anyway, and when you have one child who is in need of a little more help, it is very hard to make sure you get that balance.”

Christian is somewhat spoilt, she admits. “It is very hard not to.” While their eldest son should lead a relatively normal life to adulthood, how long thereafter nobody can predict.

“Is his life going to be shorter? It probably will,” Denning says. “But each day that goes by and each advance in medical science will lengthen the period of time he is alive.”

Heart disease the statistics

One in 100 births is approximate incidence of congenital heart disease (CHD) in the Republic.

One centre of excellence in the Republic for all children with CHD, at Our Lady’s Children’s Hospital in Crumlin, Dublin.

110* children on cardiac surgical waiting list in Crumlin.

249 beds in total in Crumlin.

21 ICU beds.

Four extra ICU beds promised by end of this spring.

191 inpatient beds.

25 of those inpatient beds closed “due to cost containment”.

558 cardiac thoracic operations carried out in 2010.

*As of March 4th, 2011

*Sources: Our Lady’s Children’s Hospital, Crumlin and Heart Children Ireland

Being one of six children, there was no time for over-cosseting: ‘I was lucky that my mother treated me quite normally’

When Mairead Brosnan was born in Cork with a complex heart defect, her parents were told there was nothing that could be done.

Some 31 years later, she is one of a pioneer generation who has benefited from evolving medical advances.

At the age of two and again at nine, she had shunts inserted to help her breathing – due to her heart condition, there was very little blood getting to her lungs. She could barely walk, while running, sport and dancing were out of the question.

But, being one of six children, there was no time for over-cosseting. “I was lucky that my mother treated me quite normally.”

Brosnan went to national school at four but was sent to boarding school for her secondary education to eliminate the strain of daily travel.

However, when she was 13 she was able to have corrective surgery to establish Fontan circulation, whereby her blood flows to the lungs without being pumped by the heart.

This changed her colour to pink, “having been absolutely blue before”, gave her lots more energy and improved her general health immensely.

After moving to Dublin to study at the Dublin Institute of Technology, she is now a clinical vascular scientist working at the Blackrock Clinic.

Brosnan is involved with the support group Heart Children Ireland, as was her mother Ita before her, to show families who are devastated after the diagnosis of a heart condition in a baby what is possible.

She also works with teenagers who want to get on with their lives, but may be held back by embarrassment about their condition or by over-anxious parents.

The prognosis for Brosnan and those of her generation born with congenital heart disease “is a guessing game”.

She is on long-term medication, including warfarin, and looks after herself – she eats well, walks regularly and does yoga.

When she first had the Fontan circulation constructed, she was told it would last 15 years at the most. “I am on year 17 and I am really, really well.”